PMR flare -Shoulder and neck pain..and headaches

I was. But I had self diagnosed myself and already started on prednisone. My markers were all fine so probably skewed a little bit. Diagnosis was based on the fact that prednisone worked within 4 hrs.

I’ve had good luck with arnica gel rubbed on to sore areas.

How was it that you had Prednisone available after you diagnosed yourself?

When I was diagnosed with PMR, I didn't have any Prednisone to take. I took Prednisone countless times prior to being diagnosed with PMR. I didn't bother with diagnosing myself. My wife made me go to her primary care doctor. My wife was the one who told her primary care doctor about all the Prednisone I took before this. I just wanted a prescription for Prednisone and I didn't care about a diagnosis.

I can laugh about it now but I had to beg for some Prednisone. I had limited success but I managed to get some Prednisone to tide me over until I could be seen by a rheumatologist. I wasn't successful at rationing the Prednisone so I had to beg for some more.

My first rheumatologist pointed to my history of reactive arthritis and uveitis and was adamant that reactive arthritis wasn't treated with Prednisone. She wanted me to taper off prednisone. I was praying for a flare of uveitis because I knew my ophthalmologist would prescribe Prednisone. Uveitis didn't happen again until I finally got off Prednisone 12 years later.

I was a certifiable mess for six months because Prednisone was restricted. I didn't seek a second opinion but a different rhteumatologist saw me at one of my follow-up visits. The first rheumatologist had already called me noncompliant with tapering off Prednisone, I was happy to talk to another rheumatologist.

The second rheumatologist "requested" that I stop taking Prednisone and come back to see her in a week or two. I did the best I could. I was off Prednisone for a day or two before my next visit. For some reason I was diagnosed with PMR. I asked what happened to my diagnosis of reactive arthritis. The rheumatogist said it was "unfortunate" that I had PMR in addition to reactive arthritis.

I still have a dual diagnosis of PMR and Reactive arthritis along with other things. I had the same rheumatiologist for 15 years. She said I needed prednisone but she tried everything she could think of to get me off Prednisone or decrease my "steroid burden." Eventually my rheumatologist called everything "systemic inflammation" and "chronic steroid use."

I once asked my rheumatolgist if Prednisone caused PMR. She said "probably not" but my immune system was deranged! My interpretation of that comment was "maybe."

Ok. I am busted. When on this site or other sites I use the word Prednisone or steroid equivalent. My wife was diagnosed with GBM in Jan2021. I had a double covid shot in february 2021. I only did it to protect my wife. By end of Feb I could not get out of bed. I was spending countless hours trying to understand everything I could get my hands on for alternatives to GBM treatments. Including Dexamethasone. They started my wife on 8mg night and morning. She was on that until after surgery. They gave her 4mg tablets of Dex and just kept them coming. Then they needed us to lower dose. So sent refillable 30 day prescription of 2mg. I had several bottles full of steroids. I spent Feb-Apr trying to figure out my condition. 2 orthopedic Dr's. my GP. even my gastroenterologist. Finally ran across information thru google on corticosteroid use for PMR as it was referring to my wife's taper. I thought thats it. Thats what I have. I already had DEX. So I decided to try it. I took 4mg that morning. By late afternoon I had no pain. I took 4mg for 2 days and then went 3mg for 2 days with no pain. At a week I dropped to 2mg and could just barely feel the discomfort. I got my PA on a conference appt and said I know what I have and I need a prescription. She lectured me for 10 min and said she would do 30 days if I sent her a copy of my appt with a Rhumy. I went to Mayo for my Rhumy. Mayo runs every test in the book. Plus some. He agreed with my diagnosis. He did not want to give me Dex but I convinced him I knew the risks. He felt I did. I was on 6 months and got off. I have not been back to my Rhumy. My PA handles it from here. But I have a stock pile of Dex. Its like gold. I keep it in the safe. So when I answer on these sites I always say prednisone. I use the conversion of 5. Even though .75 dex = 5mg Prednisone. Dex has a longer half life. So my 4mg starting dose was the rough equivalent of 20mg prednisone. So I use the 20mg as my talking point. I think its Marilynn is on 3mg dex. thats rougly 15mg prednisone. My wife's body has been severely compromised by Dex and she is on 1mg Dex. I have never taken Prednisone only the Dex.

I felt like I was busted too when I told my wife's primary care doctor the story about what I had been doing for the prior 15 years. When I told her that I only needed a prednisone prescription--she rolled her eyes and said I needed a rheumatologist. I didn't ever feel guilty though -- I honestly thought I was doing the right thing. At least I was using the Prednisone prescribed to me but I certainly didn't use it "as prescribed for uveitis."

A month or two before all this, I threw away my entire stockpile of prednisone. My thought at the time I threw it all away was that I wasn't going to need Prednisone anymore. That calculation was only off by 13 years.

The weirdest thing was when my rheumatologist asked me about headaches and visual disturbances. That was affirmative and I said those symptoms happened all the time with uveitis and trigeminal neuralgia but the shoulder and neck pain was brand new. I had no idea what PMR and GCA were. How was I supposed to know why I couldn't lift my arms. I definitely had a knowledge deficit.